Friday, April 11, 2008

This is a picture of Kaidence and her daddy after her procedure. She is still trying to come out of her sedation. Well, I am still feeling pretty down today. I must say that many of our family and friends maybe feel the frustration. I know our parents are struggling with it. Wow, we have worked so hard to keep Kaidence's heart healthy so that it will last a long time. Maybe I was also a little too proud of how perfect her new heart was for her and how flawlessly it has worked for Kaidence. I keep thinking that maybe this would not have happened if I had cancelled her appointment because of her cough. Maybe that was a sign to not do it. I don't know. I know that Kaidence's things in the past have all been part of the Lords plan for Kaidence and that was actually easier to accept than this. I guess I feel that this was just a mistake and that I walked into the hospital with Kaidence in better condition than when we left. Last time Kaidence left fixed and this time we can't fix her. Mommy's want to fix things. Ok, maybe part of me is a little selfish because I hate having one more thing to worry about with Kaidence. It seems that lately we have had a lot of "extra worries" like the ANC, possible cancer.......However, I still know that things could be so much worse and I keep that always in mind. I am praying that I can find some peace in this and that I won't be so mad. I don't like feeling this way. It is icky. I don't like having this anger. WE have come so far without these feeling and I know that it is Satan's way of getting to Mike and I. We won't let him. This little bump can't take precedence over all of our other miracles. That's is what he wants to have happen.

Anyhow, her echo today looked the same. We will keep watching and see what happens. Her next Heart Cath will be right before Christmas. Kaidence's Cardiologist said that the regurgitation will most likely get worse with the more heart cath's that are done. Unfortunately they will need to be done regardless. Hopefully her heart will hold up well with the others and we never have to open her chest again until she needs a new heart. That will be our goal. Her biopsy showed mild rejection, but the doctor thinks it is because she is only on the one immunosuppression until we can get her white count numbers fixed. We will hopefully start her cellecpt medication back up soon. That will help with the rejection. Please keep our family in your prayers, I need that overwhelming feeling of peace that I used to have in the PICU. I don't want to be angry, sad or depressed. We have to much still in our favor and I don't want to waste my precious time with my children and husband on stuff like this. I know that it is ok to be angry, however there comes a point that you have to take it for what it is and move on. Please pray that I can move on sooner than later. Whether this was in the Lords plan or not I know that he will continue to watch over Kaidence and make sure his plan still takes place. Sorry for the long post but it felt good to talk.

Thursday, April 10, 2008

Tonight has been very frustrating. We had Kaidence's echo done. During the echo we found that some damage was done to her new heart during the cath lab today. They figure what happened was that when they took the prong like snippers to grab a biopsy of the heart it clipped the part of her valve that makes it open and close. They said it is very rare to have something like this happen (should that make me feel better?) and that the doctor had never had it happen before.It is causing her valve not to open and close like it should and so the blood doesn't go where it should as well. Kaidence could live with this regurgitation if it does not get worse but it could put added stress on the heart and shorten its life. If things get worse they will have to go in and do another open heart surgery to repair the valve. Our problem is that she has already had two open heart surgeries and the more times you open the sternum the higher death rate you have. We wanted to not have to open it until Kaidence needed a new heart. I am not going to lie. Tonight I feel very frustrated. With all of Kaidence's other problems in the past I handled them well but tonight I am frustrated. I keep playing the famous "what if game." I know that Kaidence's Cardiologist is not very happy about the whole thing. The doctor that did the procedure came in and apologized for possibly causing a problem that may compromise Kaidence's heart. Kaidence just finished fighting 4 IV pokes and is exhausted. I am going to go and love and cuddle my little girl. Please pray for her once again. I am hoping that we can have more answers in the morning and that things are better and not worse. Just another bump in the road. I know that the Lord still has a plan for Kaidence.

Today has been a surprisingly nice day for Kaidence at the hospital. We got to the hospital today at 6 am and they took her into the cath lab around 7:45am. Cath lab took about 3.5 hours. During her procedure we went to visit our PICU friends. It was weird to see Kaidence's name back on the white board. Kaidence did great. Her numbers all looked great as well. They check different pressures in her heart and lungs in the cath lab. They also shoot dye through her heart and watch how her heart and all the vessels handls it. Because she is a transplant she is at a higher risk of artery disease, but all of that looked good. Everything looked AWESOME today. Her heart is happy and working well. We are hoping that the heart biopsy will look as good. That will be back tonight sometime. Also, when they looked closer at Kaidence'sLPA it looked fine and so they never had to stint or balloon it (amazing). Which means that she was transferred to the floor and not the PICU. It is wonderful that we didn't have to do any intervention with the LPA, because it would be one more thing to maintain and would have to be redone often to keep up with her growing body and heart. We are getting an echo this afternoon as well. Also, Kaidence may be back down to once/week appointments. YEAH!!!!! I am so excited not to have to come to cardiology twice a week. I have one more whole day now to conquer the world. They will continue to watch miss K tonight for bleeding and any other problems. Kaidence has had a nasty cough for about 10 days now. They noticed that her upper right lung is a little collapsed. Usually it is her left lung giving us problems. She has needed a little oxygen help at times but they aren't sure if that is do to being intubated again during surgery or her being sick. We will wait and see. The plan is to come home tomorrow. That will be good. McCaden told my mom today that he doesn't like it when we go to the hospital . He said it makes his tummy hurt. What cute little guys we have. Thank you for all of your love!

Wednesday, April 9, 2008

Sorry that I haven't posted, but my laptop died. Anyhow, tomorrow morning Kaidence goes in for her Cath Lab. They will do a heart Biopsy and also place a stint or balloon in her LPA (left pulmonary artery). We should have biopsy results back that night. We will then spend the night in the PICU and she will get some IV medications that are taking the place of some of the other medications that we had to take her off because of her low ANC. Hopefully it will be a fast PICU trip. Anyhow, we will have family staying at our house with the boys. I have told them that sissy will have to stay at the hospital and they started to get a very concerned look on their faces. I think they feel better after explaining things but they still have a lot of questions. We hope that all is well with everyone and we will keep you posted about tomorrow. Thanks for all of your prayers.

Sunday, April 6, 2008

I have often wondered about "what I am going to do to help make a difference?" One thing that I feel so strong about is Organ Donation. I don't think that any one realizes how many children(adults) would have a fair chance at life if people would just be willing to donate. Please consider registering to be a donor. I have seen too many little ones pass away lately when a heart was all that they needed. It is so sad and senseless. Other organs are desperately needed as well. There are some medical deaths that cannot be avoided but when it comes to those that need organs donated, YOU CAN save their lives. I hope that you never have anything come upon you to where you are the donor and I also hope that you are never the one needing the organ. The thing is that none of us know what our futures hold. All I am asking is please educate yourself now and consider giving this precious gift of life. I have placed links on my page to help educate you and also so that you can register as a donor if you choose. Thank You to those that have already chosen to do so. In the future Kaidence will likely need another transplant. Kaidence would not be here if it weren't for the wonderful family that chose to give her a second chance at life, please be willing to do the same.

Slide Show

About Me

I spent 127 Days at Primary Childrens Hospital in the PICU. I was born healthy but became ill after catching a virus that caused my Cardiomyopathy (an enlarged heart). My heart was not pumping and I was dying. We were granted special government permission upon emergency use to implant the "Berlin Heart" an LVAD (Left Ventricular Assist Device) for babies. This would give me more time to wait for a heart. I was the first patient in the state of Utah to receive this device. I received the experimental device in November 2007. It saved my life and I received a heart transplant December 2007, two days before Christmas. My new heart has given me a new chance at life and I am forever grateful to the fammily that gave me my "Angel Heart". Today I am 5 years old and awaiting a second heart transplant due to severe Coronary Artery Disease. My family and doctos were shocked to learn that I needed a new heart once again.
Our little Kaidence is a tough fighter. Our little Fairy of Faith.
This blog documents her Journey of FAITH!